Well I've been extremely tired...since surgery (like 2 hours after surgery) I developed a crazy cough deep in my lungs. Both doctors assured me it was from the breathing tube and anesthesia. So by the third week and the third time seeing a doctor I had to beg and tell them I wasn't leaving until I had meds. Yay...I got cough syrup with codeine and an inhaler to puff on every 4 hours. I started that on Friday and at least I'm able to sleep now - still coughing but sleeping!

Here is Rohnin informing everyone that she is about to turn 1!!!

We went to the Dixie Kite Festival this past weekend....bad weekend for it. We were near 96 degrees.

I kept pouring water on Rohnin - she at least had shade.

But after about 30 minutes of being there we left - the heat is too much for a girl that could easily have seizures due to heat. She did get her free book for reading for the past few months.

My middle daughter...enjoying a day of napping. Best doggie daughter ever!

Here is a funny picture of Rohnin being bad. She got caught trying to mess up her sister's room. She likes to make Haven crazy!

Friday, April 13, 2012

This is an article written about one of our ROHHAD friends. She lives in Scotland. I wanted to share because there are so few of us and we need support and spreading awareness is the best way to do that!

This is Daniella right after she was diagnosed with ROHHAD Syndrome.

Daniella's problems began at around the age of 2 1/2 - which she started aggressively looking for food. Around Christmas 2010 Daniella fell seriously ill and couldn't walk. After lots of testing they found she was going in to kidney failure and started dialysis....then after suffering heart failure her family feared they would lose her.

Doctors worked hard to find a diagnosis for her and she is doing much better today as she is monitored and cared for 24 hours a day.

Thursday, April 12, 2012

Haven had her school pictures taken. She is just getting so grown up. I can't believe she's 8 years old. It's amazing and crazy at the same time. She loves these hair flowers she gets from her Uncle Kevin in Hawaii. She has one for every outfit in most colors.

May be some moms out there can help me with something. For the first time ever Haven does not want to go to school anymore. We (dad and I) really like this school for it's education values but Haven is having a really rough time with the kids suddenly. Many of the girls are picking on her or making fun of her, kids are blaming her for "stealing" from them, saying she called another girl "fat" and now all the kids call her rude and mean. I really don't know what to do. Haven has always loved school and would rather be at school but now she doesn't want to go at all. She says she is told to handle it on her own and she is trying to do that but doesn't know how when all the kids believe the other kids. She told me after school yesterday that she can't believe she has to go for another 6 weeks...that she's counting down the days when she doesn't have to go back. This makes me seriously sad. I'd rather home school her then have her not like learning and going to school.

So please if anyone has any help or advice for me here send it my way. I'm not sure how to help her except to tell her to ignore them and focus on her studies. But reading about horrible teenagers in the news lately I don't want her to grow up - end up in high school with no friends - being made fun of - and then going berserk.

Well it's been two weeks since I had surgery on a large incarcerated umbilical hernia and a smaller hernia above that. I have now met with the OB in regards to the baby and surgery. All is perfect there. Today I met with the surgeon for follow up.

Here is the scar after 2 weeks. Looking great. Surgeon was very happy. Hubby said he'll design a smiley face tattoo I can get for the scar! ha ha ha...

All I have to say is if you've ever had an incarcerated hernia (intestines poking through the muscle wall that get pushed back in to your body) then you understand how much pain I was in....while pregnant none the less. I couldn't walk for days at a time, couldn't lay down, could barely breathe. It was unbearable.....now, since the pain of the surgery is subsided, I am very happy I did it. Baby is perfectly fine and I can walk! I haven't had the extreme pain or anything. PS: exactly why I would rather push a baby out then have a c-section!

I do have to say Monday was rough with Rohnin. I was trying to be "normal" mom and do what I could. Picking her up a few times destroyed me by evening. It felt as though the mesh was tugging at my stomach and it was killing me. I've spent the last two days in bed (seriously sleeping about 6 out of 8 hours) and am back at "normal" today. Only 4 weeks left of limited activity.

HUGE THANK YOU TO GRANDMA AND GRANDPA FOR WATCHING OUR GIRLS ALL WEEK! I wouldn't have made it through the critical recovery period....1 week down and 5 to go before I'm officially released. PS: Only 11 weeks left before the boy is born!!!

Here are a few fun photos of the week - if you are on my FB you've probably seen enough of these!

Rohnin hanging at Gma and Gpa for my bday!

Haven working on her Easter eggs with Grandma

Almost finished....

Rohnin leaves her mark on a poor defenseless egg....

Becoming daddy's girl....

Hanging with Grandma at the park

She looks like she's up to no good

More park time

Mmmmm....toys....

Happy baby girl....

Hair bow party at the neighbors....

Thank you so much again for all your help the past week and a half.....

Wednesday, April 4, 2012

On Tuesday we headed out to our other new hospital - Huntsman Cancer Institute in St. George. This is where Haven will get her port flushed every 4 weeks and then every 6 weeks she will get her labs drawn and then every 8 weeks she will get IVIG. So, we actually get a one month break and then we're in ever two weeks for a month....then another month break. Then every few months she will head to SLC Primary Children's for a full run down of labs and check ups.

Her room was very nice at this hospital. It's bigger than my labor and delivery room and she had a private bathroom. I was very surprised and happy. She was very well taken care of.

Here is Haven hanging out with the Child Life specialist. He was great and they talked about everything.

Haven's first time having a male nurse. Jason was great...he was very willing to let Haven do her own flushing and everything. Accessing the port was easy and she did very well. She of course made sure he did everything the way her other nurse did it.

Nap time. I let her stay up watching Happy Feet Two the night before so she'd be nice and tired. She fell asleep about 20 minutes in to the infusion of the IVIG.

Oh....5 hours later we are done with the IVIG...now to do a flush of saline...wait 30 minutes...flush again and close up with Heparin.

If you've worked with Haven you know she wants to do her own flushing, blood draws, and Heparin. I was happy that Jason would let her since he'd never worked with her before.

She did extremely well.....at the end when the took the needle out they hit a small vein which caused blood to pour out everywhere. When I say pour out it means I thought I was going to pass out seeing so much blood. Haven, of course, was amazing. She grabbed napkins and put pressure on it and just asked everyone to get her stuff to help. Her nurse Jason was already on it...mom did not do so well and was not overjoyed at seeing so much blood come out of her child's chest.

My Haven is amazing...she constantly blows our minds and she is a true rockstar. Love you Roo!!!!

Tuesday, April 3, 2012

So
already having to visit this unexpectedly a few months early I am very
happy with the accommodations and nurses. Although it did take us two
days to figure out how to get Kris in the door without fighting a nurse
to do it. They have a secret code you're supposed to say at the
door.....I was too drugged up after surgery to know there was a code!
:) Now we understand for next time..................

I am happy that this hospital has a great NICU, works with high risk pregnancies....and works with surgeries while pregnant!